Wednesday, September 30, 2009

Every year, 20 million babies are born too soon, too small and very sick. Half a million premature babies are born each year in the United States.

November is Prematurity Awareness Month for the March of Dimes. During November, the March of Dimes works on raising awareness about premature births in the hopes of saving more babies from being born prematurely.Hear about the work that the March of Dimes is doing to prevent birth defects, premature birth, and infant mortality from NICU Physician (Neonatologist) and former NICU Parent, Dr. Jalie-Marti:

More on Prematurity Awareness MonthThe March of Dimes offers information on ways to learn, do and give to show your support for the March of Dimes' Prematurity Awareness Month.

Sunday, September 20, 2009

One of the biggest problems for NICU parents is starting to processes the experience and cope with their NICU experience after they have left the NICU. Dr. Holditch-Davis, professor at Duke University School of Nursing noted in a recent NY Times article,

It may be several months later when they’re ready to process what they experienced, but at that point, family and friends don’t want to talk about it anymore.

Once parents are home from the NICU and the daily activities become more routine, this is the time when many parents finally start processing their NICU experience. Researchers are starting to recognize parents with depression, anxiety and PTSD after the NICU, as noted in the blog post, NICU Admission Puts Parents at Risk for PTSD.

Helping NICU Parents After the NICU

There are several ways to help NICU parents after the NICU to reduce their risks of developing problems after a NICU admission.

Education: Parents

Education: Physicians and Health Care Providers

Identifying Symptoms

Support for Parents after the NICU

Education: Parents

Part of my hope for the NICU Parent Support Site is that by writing about different topics and different issues facing NICU parents, they will understand more about the normal response NICU parents can face when dealing with the many losses that result from a NICU admission.

Education: Physicians and Health Care Providers As noted in the blog post on After the NICU: Aftercare for NICU Parents, "There are many different physicians and other health care providers who might see NICU babies and NICU Parents in follow up."

The key here is educating all of the different health care providers who see NICU parents in follow up to be able to identify those parents who may be at risk by checking to see that the parents are doing well after they are home from the NICU.

Identifying SymptomsResearcher and former NICU Parent Dr. Michael Hynan designed a helpful screening tool for determining NICU parents at risk. The Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ) can be easily administered. This tool can help determine if the NICU Parents might need some additional support once the family is discharged from the hospital.

If I was able to do so, I would see that all NICU parents take a PPQ (or similar) screening questionnaire to make sure they are doing well once home from the NICU.

Support for Parents after the NICU - HospitalsSupport for NICU parents can vary greatly depending on the hospital and depending on the nature of their newborn's health. Some hospitals offer good programs after the NICU with support groups, education and follow up. Others (like our hospitals) may be focusing on just getting parents through the initial ordeal.

Often the follow up ball is dropped by the hospitals, because parents are no longer in the NICU and their regular health care providers don't know, or don't think to make sure they are still doing o.k. several weeks or months after the NICU.

Support for Parents after the NICU - March of DimesSome hospitals have a NICU Family Support Specialist from the March of Dimes to help offer NICU parents support and help in navigating the confusing NICU. Their NICU Family Support website offers information, resources and online communities 24/7 online.Support for Parents after the NICU - OnlineIn addition to the March of Dimes, Share Your Story, there are other online resources available for NICU Parents. These are the main ones that I've found below.

I have always known that grief is a total response to a loss. Grief impacts the mind, body and spirit. What I was surprised to discover several years ago myself that the body remembers grief even when the mind may not.

Radiating Back PainTwo years ago I experienced an episode of excruciating back pain. I'd been pushing myself in a physical education class (stair climbing) and a couple of days later turned the wrong way in bed and experienced pain radiating down my back into my leg. The pain felt like sciatic pain.

I made it in to teach my class and was able to stand through the lecture then came home to crash out on the couch and fell asleep for a nap—BIG mistake. I really had problems getting back up off of the couch and more problems straightening out to move around. The pain was bad enough to call my husband home from work to help watch the girls.

I slept a very restless night, still uncomfortable, still in pain. Even though I was uncomfortable, I decided it wasn't worth a trip to the Emergency Room and decited to let everyone else sleep through the night rather than waking them up. I kept hoping things would be better in the morning.

With a bit of home treatments and over the counter medications, in a couple of days my back pain started improving. Once the pain started subsiding, I was able to take a look at the calendar and made a rather startling discovery...

My Body Remembers Our NICU TimeI was amazed when looked at the date for the night I had been unable to sleep because of the pain and elected to let everyone else sleep through the night. The date of my excruciating pain was 5 years to the night that my youngest had been intubated while in the NICU for breathing difficulties.

When my daughter was intubated, I was still in the hospital recovering from a C-section, so I heard the news late in the evening. I elected to let my husband and mother sleep through the night, figuring that they couldn't do anything more about her being intubated, trusting that things would work out, and knowing that I could always call if things got worse. I kept hoping things would be better in the morning.

It was probably one of the most helpless feelings that I experienced as a mother and as a physician. My daughter's care and safety was in the hands of others. There was nothing else that I could do.

I had also felt helpless days before when she had been moved into the NICU hours after birth because I was unable to move initially of the spinal anesthesia (one of my greatest fears about having a C-section).

Even though I was unaware of the date five years later, my body remembered this other time when I had been in emotional and physical pain and kept hoping things would be better in the morning.

Body Healing from LossThis quote by Mel Colgrove describes how the body heals from loss.

When an emotional injury takes place, the body begins a process as natural as the healing of a physical wound. Let the process happen.Trust that nature will do the healing.

Mel Colgrove

It is interesting to note that five years later, my body was still holding on to the traumatic memory of my daughter's time in the NICU even though my mind was not.

Was the Back Pain an Anniversary Response?The National Center for Post Traumatic Stress Disorder defines an Anniversary Reaction as "an increase in distress around the anniversary of a traumatic event is commonly known as an 'anniversary reaction.' This reaction can range from feeling mildly upset for a day or two to a more extreme reaction in which an individual experiences significant psychiatric or medical symptoms."

What is interesting is that "on the anniversary of traumatic events, some people may find that they experience an increase in distressing memories of the event. These memories may be triggered by reminders, but memories may also seem to come from out of the blue while at work, home, or doing recreational activities." I wasn't having a distressing memory in my mind, I was experiencing the distressing memory in my body.

It is likely based on these definitions that the back pain episode I experienced five years later to the date was an anniversary response, that my body remembered, even though my mind did not.The Body RemembersBabette Rothschild, MSW, LCSW, is author of The Body Remembers: The Psychophysiology of Trauma and Trauma Treatment. In her book she looks at current thought that people who have been traumatized hold an implicit memory of traumatic events in their brains and bodies.

Ms Rothschilds has developed a method for treating those who have lived through a traumatic event. She believes thattraumatic events exact a toll on the body as well as the mind. Her book and her practice which focuses on Somatic (Body) Therapy.

According to her publisher, this book illuminates the psychophysiology of trauma, "shining a bright light on the impact of trauma on the body and the phenomenon of somatic memory."

The Memory Lives OnThankfully the anniversary of my daughter's NICU adventure for the past two years has gone by uneventfully, but the memory lives on within the posts of this blog.

Thursday, September 17, 2009

Lullaby Link is a website developed by husband and wife, Tim and Amy Wilson. Lullaby Link provides lullabies, lullaby lyrics and other resources to help support parents in bringing music into the home.

The Divine Hours of Motherhood can be ordered as a CD or downloaded as an MP3 Album.

More Suggestions for Using Lullabies in the NICU

Amy's son Clayton was in the NICU. She shares her insights on using sound and song on their page on NICU Music Ideas:

No matter how your baby begins his earthly life, you can use sound and music to bond with them. Even if your baby is too small to be held, there is healing for them in your voice and they will be thrilled every time they hear you.

Amy offers some great ways to use music with premature babies:

Hum. This is especially effective if you and your baby are skin to skin and heart to heart on your chest.

Official "Wires" VideoYou can view the official "Wires" Video in several places on YouTube, here and here. In the official version you get a sense of feeling the "Wires" and a better feeling of the personal anguish felt by NICU parents. This version has had the "Embedding disabled by request."

Sunday, September 13, 2009

The day has finally arrive and you get the news you have been waiting for days, weeks or months. You finally get to take your NICU baby home.

This moment is met with great joy combined with a bit of fear and dread, since suddenly now you will be on your own with your NICU baby at home.

After the NICUFollow up or Aftercare is monitoring the health and well being of the NICU family after the NICU admission. According to the Merriam-Webster Online Dictionary, Aftercare is

...the care, treatment, help, or supervision given to persons discharged from an institution (as a hospital)

What I didn't realize at the time and did not discover until I was researching for the articles for Neonatal Nework is that NICU Parents are at an increased risk for experiencing a variety of disorders and responses...after the NICU.

Concerns about Follow UpSince finding out the NICU parents are at risk for developing several different conditions and reflecting on our own NICU follow up, I have been very concerned about the aftercare (or lack of aftercare) that NICU parents receive following a NICU admission. As noted in the recent article on PTSD and the NICU by New York Times author, Laurie Tarken:

Experts say parents who are at risk for post-traumatic stress should be identified ahead of time and given help to prepare them for dealing with the initial trauma. But many hospitals are focused on saving the infants, not the emotional crises of the parents.

Research has been done demonstrating that organized family support program could aid in maintaining family stability during the newborn’s intensive care hospitalization. Other studies have shown that new NICU mothers paired with former NICU parents had less anxiety and depression, and more social support, than mothers who did not have a NICU parent 'buddy.'

So what can be done about providing aftercare for NICU parents?

Aftercare for NICU ParentsFrom my perspective as a primary care physician and former NICU parent aftercare for NICU parents should be provided by any professional seeing a parent or a baby in follow up from the NICU hospitalization.

The key is getting the word out to the right groups. As I wrote in the NICU article that was published:

NICU physicians and nurses may be aware of the research supporting preventive or postnatal intervention, but they generally are not the ones following up with the family. Conversely, the obstetricians/gynecologists, pediatricians, family practitioners and nurse practitioners who are providing the follow-up appointments may not be aware of these NICU studies.

Those who may see NICU parents in follow up, the the obstetricians/gynecologists, pediatricians, internists, family practitioners and nurse practitioners need to know about the risks that NICU parents are at for different.

Articles like the recent one in the New York Times will go a long way in helping get the word out to main stream, so NICU parents and friends of NICU parents will be more likely to know about the risks that can occur, after the NICU.

Saturday, September 12, 2009

Part of the reason for including encouraging messages as part of the NICU Parent Support Blog is because I have long been a believer in the power of words to help during difficult times. Encouraging words can be very helpful during challenging times. Words can be helpful in helping one cope with life's difficulties, because the words help us to shift and focus on something else that is positive.

British philosopher, Paul Brunton, who dedicating his life to an inward and spiritual quest offers these encouraging words about living each moment anew.

Every morningis like a new reincarnationinto this world.

Let us take it thenfor what it isand live each moment anew.

Paul Brunton

Brunton's words of encouragement and hope can be very helpful for NICU parents struggling to make it through each day in the NICU, trying to put behind the bad days and focus on the good ones. This quote about remembering to live each moment, each new dawn anew can be helpful in getting through the challenging days and waking up to face the new day with a new start.

About Gratefulness.orgGratefulness.org is a network for grateful living. They are an international nonprofit organization provides resources for living in the gentle power of gratefulness, which restores courage, reconciles relationships, and heals our Earth.If you want a dose of gratefulness in your life, I would encourage you to sign up for their Word for the Day that comes daily via email. I have received their messages of encouragement and hope for years.

Thursday, September 10, 2009

NICU Admissions are a stressful time and even a terrifying experience for all of those involved. Trying to figure out how to manage in a the strange NICU world can be overwhelming for many NICU Parents.

Some parents continue to find the NICU experience to be an overwhelming one. As noted by former NICU Parent, Kim Roscoe:

The NICU was very much like a war zone, with the alarms, the noises, and death and sickness. You don’t know who’s going to die and who will go home healthy.

NICU experiences can even continue to haunt them once they have returned home with recurring flashbacks and a hypervigilant state. Researchers are slowing realizing (and documenting) that having a child in the NICU puts parents at risk for developing PTSD or Post Traumatic Stress Disorder.

In a recent article by Laurie Tarkan for the New York Times, she summarizes three different types of traumas that NICU parents experience with put them at risk for developing Post Traumatic Stress Syndrome (PTSD):

The NICU adventure is more like the war zone and unlike other single traumas (like an accident), because the bad news can keep coming again and again, re-traumatizing parents every time there is a setback in their NICU baby's health.

Recognizing PTSD (Post Traumatic Stress Disorder)The National Center for PTSD reports that there are four types of symptoms for PTSD: reliving the event, avoidance, numbing, and feeling keyed up.

Reliving the event (also called re-experiencing symptoms) - Bad memories of the traumatic event can come back at any time resulting in feeling the same fear and horror you did when the event took place. Nightmares and flashbacks may also occur. A flashback is a feeling like you are living through the event again.

Avoiding situations that remind you of the event - Avoiding situations or people that trigger memories of the traumatic event, even avoiding talking or thinking about the event.

Feeling numb - Find it hard to express your feelings.

Feeling keyed up (also called hyperarousal) - Feeling jittery, or always alert and on the lookout for danger.

When to Advise Seeking More HelpAny parent feeling or showing any of the following:

Prolonged agitation or anxiety

Depression or extreme hopelessness

Impaired daily activities or job function

Suicidal thoughts or ideas

Extreme physiologic or psychological reactions

Substantial guilt

Substance abuse either alcohol or drug use

Psychotic states

Uncontrolled rage

Prolonged, inhibited or absent grieving

Any NICU parent experiencing signs of PTSD or the other concerning signs above for more than a month should seek out their health care provider for further evaluation to help get your life back under control.

Sunday, September 6, 2009

Tara, a former NICU parent contacted me after reading the NICU Parent Support Blog and asked if I would be interested in sharing the prayer poem that she wrote about the N.I.C.U.

She wrote the poem for a friend when her friend's child was in the NICU several years ago. She had already lived through her own experience of having twins in the NICU.

A Prayer from the N.I.C.U.by Tara Roper

Dear God,I have a request to make.Just a moment of your time it will take.You see, my parents, are heartbroken and sad,and they have prayed to you with all they had.

Could you just hug them and remind them you care,as they are wishing I was at home, not here.This time is confusing, unlike how they pictured it would be,But I want them to know that you take care of me.

Although I am sleeping in this little bed,and I am often too tired to raise my little head,please remind them that I know they did their very best.And that at night I am protected as I sleep upon your chest.

They think I am so lonely when they are away,and if I could tell them, I would say

I know this is hard, and God understands,But just know He has never let go of my hand.He is always with me, like He is with you,and all this has a purpose too.

And God, while I am in this temporary N.I.C.U. home,I just want them to know I have never been alone.

About the AuthorTara Roper is a 34 year old mom of three in the Atlanta area. Her daughter Caroline is five years old , and her twins, Maggie and Jacob are almost three years old. She and her husband John have lived in the Atlanta area and Boston area in the last ten years. Tara has been the editor of local parenting newsletters and writes on Faithwriters.com. Tara is the Assistant Coordinator for The Women's League Inc. for Northstar Church. Tara is currently taking time off from being a special education teacher to be at home with her children.

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About the Blogger

Kirsti A. Dyer MD, MS, FT is a respected physician, health educator, professor, author and former NICU Parent. She uses different identities Comfortdoc, Griefdoc, Momdoc, Professordoc, Nutritiondoc and Wellbeingmd depending on the circumstance. Since 1997 she has served the grieving Internet community with the Journey of Hearts website. She keeps several blogs on a variety of topics.

Author's Biography Information

Kirsti A. Dyer MD, MS, FT is a respected physician, an expert in life challenges, loss, grief and bereavement, professional health educator, professor, lecturer and author.Dr. Dyer is the Domain Designer for the Journey of Hearts website, created in 1997 as the first and only physician-based website devoted to educating people about the normal grief response. Dr. Dyer is also a former NICU Parent, author of the Free e-Book For Those Who Hold the Smallest Hands and founder of the NICU Parent Support Site, http://www.nicuparentsupport.org.

The blog and website were created to provide information, support and resources for NICU Parents and Families.